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Decision time: 4 treatments, few options and could really do with some advice

Hello hello Internet hive mind

I was diagnosed with RRMS 6 months ago now. My recent scans how significant changes since my last 6 months ago with 3 new lesions on my brain. I’m also just coming out of a relapse that has lasted 3 weeks (first pain-free day, yay!).

My doctor has pre-approved me for treatment and put me straight forward for tier 2 treatments. However, the decision ultimately lies with me apparently. I can sit here and read the literature all day, I studied as a medicinal chemist I know the risks, understand the lingo and the odds and I know how shit some of the side effects could be. But I’d love to hear some subjective experiences with the following treatments and what has generally worked for others.

The four I’ve been recommended are:

-Ocrelizumab
-Natalizumab
-Cladribine
-Tectidera

I haven’t spoken out about this much yet so any experiences and info from the community I’d find really invaluable

Wish you all good health and better days ahead

Clementyne

look out for any posts by Sssue as she often provides a link to the MS Trust regarding treatment options.

i’m a newbie in comparison.

of the four you have been offered i only have experience of tecfidera.

Hello Clementyne

Here is the MS Trusts Decision Aid: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

It lists all the available treatments together with their average relapse reduction rate and potential side effects.

I have experienced Natalizumab (Tysabri) and Tecfidera. Unfortunately I had side effects from both (as I have from the two other DMDs I’ve tried and other drugs too - so ignore my experience, my body is terrible at accepting drug therapies!).

Tysabri is definitely a better drug than Tecfidera. It has a greater relapse reduction rate (70% as opposed to about 50%) and the side effects profile is just as good. With the exception of PML - a nasty virus that you could contract from being on Tysabri, but only if you test positive for the John Cunningham Virus. Many people do test positive, but there is now a way of establishing exactly how likely you are to get PML although JCV+. Plus, you can only develop PML after being on Tysabri for 2 years or more. Tysabri is a monthly infusion wheras Tecfidera is a daily tablet so can take up more of your time.

Ocrelizumab (Ocrevus) looks like it’s an excellent drug. Unlike Tysabri, it’s given by 6 monthly infusion rather than monthly. There are many people on here who’ve now taken Ocrevus and can give you feedback. Mavenclad (Cladribine) looks to be an easy drug to take, being a tablet, but doesn’t have such a good relapse reduction rate, (being only an average of 50% as opposed to Ocrevus’ 70%).

It’s really a case of taking advice from your MS nurse and neurologist as to which drug they think would suit you best. Taking views from here as to how people have found their DMD experiences is also useful, but you need to bear in mind the fact that just as MS treats us all differently, so our reaction to drugs is individual too.

Best of luck.

Sue